Wednesday, November 28, 2012

As medical adviser to the ME Association and an ME sufferer, Dr Charles Shepherd has spent the past two decades vigorously fighting the dismissive attitude still common among the medical profession. Here, he talks about the latest research into the disorder

ByCaroline Lavender

7:30AM GMT 26 Nov 2012

It was in the late Seventies that Charles Shepherd became ill with myalgic encephalomyelitis, or ME as it is better known. It was an era, he recalls, when the condition was still dismissed as “hysterical nonsense” by most clinicians. Working as a young doctor at Cirencester Hospital, he had contracted a severe case of chickenpox from a patient with shingles. “I’d been perfectly fit and healthy. The infection had resolved but I felt mentally and physically knackered and kept having to take more and more time off,” he recalls.

Shepherd says he has never been truly well since. He “plods along”, though managing to enjoy life: he regularly walks Polar, his snow-white labrador, near the Cotswolds home he shares with his wife Pam, a nurse. On the day we meet, he is helping his daughter Suzie, a student in London, plan her 20th birthday (he also has two sons, Patrick, 28, and Alisdair, 31).

As medical adviser to the ME Association, Shepherd has spent the past two decades vigorously fighting the “all in the mind” attitude which, he says, is still common among the medical profession. He is convinced that this complex disorder, which has puzzled scientists for decades, has biological rather than psychological origins – although unlike some on the militant fringes of the ME community, he prefers to use reasoned persuasion rather than threats when discussing the cause.

“I unequivocally condemn people who send abusive emails,” he says, referring to the harassment of researchers, doctors and journalists – including the Telegraph columnist Dr Max Pemberton – who have speculated on the “psychological” explanation. “But I also understand why people feel so angry. A significant minority of doctors still don’t believe in the existence of ME. They refuse to diagnose or manage it – that is totally unacceptable.”

Now more commonly known as chronic fatigue syndrome (CFS), ME has come a long way since it was derided back in the Eighties as “yuppie flu” (its typical victim supposedly being a high-flying young professional). Today, it is recognised by the World Health Organisation, the National Institute for Health and Clinical Excellence (Nice) and much of the medical establishment as an often severely disabling disease, characterised by a bewilderingly wide set of symptoms, the chief ones being profound fatigue and widespread muscle pain. Difficulties with concentration and memory are also common.

Yet the debate over the cause of ME continues. Is it biological, psychological or a combination of both? The controversy flared up again in September, with the publication of findings finally disproving the theory that ME is linked to XMRV and mMVL, viruses that had previously been isolated in tissue samples taken from ME patients. Scientists at Columbia University, New York, found compelling evidence that detection of the viruses was a result of contamination, corroborating two previous studies’ findings.

The collapse of this theory, greeted with dismay by some ME patients, came as no surprise to Shepherd, who says he was always sceptical of the “hype” surrounding it. “In the US people spent a lot of money getting tested [for XMRV] and getting anti-retroviral drugs, but we have always advised against this because the research [from the University of Nevada, published in 2009, that implicated the virus ] hadn’t been properly evaluated or replicated.”

By taking this stance, Shepherd himself became the target of hate mail. “People get so desperate and put such faith in findings, they find it hard to have them criticised.”

ME researchers now view the illness as having three separate components: first, a (probable) genetic predisposition; second, a precipitating factor – which for 75 per cent of patients is an infection, usually viral, although occasionally other immune stressors such as immunisation may be a trigger; and finally the development of the condition itself. Other signs include fainting, low blood pressure, and irritable bowel syndrome.

The origin of such symptoms remains a mystery. One theory gaining favour is that ME patients have an aberrant immune response which fails to “switch off” after the original infection has resolved itself. In particular, it is possible that some ME patients have a surfeit of cytokines – chemicals produced by the immune system.

Another theory is that an auto-immune response (in which the immune system produces antibodies that attack the body’s own cells) may be involved. Other research is looking at potential abnormalities in the muscles of ME patients, with evidence that some sufferers produce excess acid when they exercise (Shepherd himself took part in research on muscle tissue – and still has a scar on his leg to prove it).

One study at Liverpool University is examining potential structural abnormalities in the mitochondria – cell components which produce energy in a usable form – in skeletal muscle.

A further focus of research are abnormalities in the hypothalamus. This tiny pea-shaped gland in the brain regulates a number of functions including hormone secretion (via the pituitary and adrenal glands). Problems here could help explain symptoms as diverse as sleep disorder, low blood pressure, temperature disturbance and heart, bowel and bladder problems. “A large number of papers demonstrate that ME patients have abnormalities in the hypothalamic-pituitary-adrenal axis,” says Shepherd.

In particular, he says, ME patients have been found to have lower levels of cortisol, a hormone secreted by the adrenal glands. He concedes that ME researchers are still “fitting together the jigsaw puzzle”, with some way to go before treatments are developed. “We have reached a point where there are drugs that would be worth trialling,” he says. But clinical trials are expensive to run and the pharmaceutical industry, the only realistic source of such funding, has shown little interest.

In the meantime, can graded exercise (a programme aimed at building up activity levels) and cognitive behavioural therapy, advocated by Nice, help with the symptoms? “The Nice guidelines on ME are not fit for purpose,” Shepherd argues. “They reflect the belief that this is a psycho-social illness.” He himself is a fan of pacing – a technique which involves listening to your body to find the right balance between rest and activity. “I go swimming and walking, but within the limits of what I can do.”

He also feels progress has been stymied by rebranding ME as chronic fatigue syndrome. “Doctors never liked the term ME because it refers to inflammation of the brain and spinal cord, which has never been found,” he says. “But calling it CFS has made research trickier because CFS is an umbrella term for different pathologies – it’s a bit like grouping together all the different kinds of arthritis and saying they have the same cause.” He prefers the term myalgic encephalopathy, which reflects a significant neural abnormality in the brain.

He is encouraged, though, by progress at the Medical Research Council, where an expert group to encourage high-quality research into ME was set up in 2008, and where, last year, £1.5 million was ring-fenced for this purpose. So far funding has been approved for five studies – among them mitochondrial function and cytokine production in muscle tissue, immune system involvement and autonomic dysfunction.

So is Shepherd discounting entirely any psychological component in ME? “I have no problem,” he replies, “with the idea that the mind affects the body and the body affects the mind. Of course, people who are chronically ill get depressed and have psycho-social stress. But the point is that too much energy and money has gone into research based on the belief that ME is psycho-social – when the right route is biomedical.”

Tuesday, November 27, 2012

A British psychiatrist should be stripped of an award, fellow scientists said last night, as one of the most heated debates in medical science continued.

Professor Simon Wessely, one of Britain's foremost experts on ME, won the John Maddox Standing up for Science honour earlier this month. The prize was created by the journal Nature and the charitable trust Sense about Science. It was given to Professor Wessely for "courage" in speaking out about his studies into ME in the face a prolonged hate campaign and death threats. The Chinese science writer Fang Shi-min shared the award.

But critics protested against the decision last night. They said the professor's work perpetuates the idea that myalgic encephalomyelitis, also known as chronic fatigue syndrome (CFS), is a mental health problem, trivialising what they claim is a largely physical illness. Malcolm Hooper, emeritus professor of medicinal chemistry at Sunderland University, said: "He's responsible for trying to make ME into a psychiatric condition when it's not. He has done very poor science."

Another opponent, the Countess of Mar, said: "I was absolutely horrified when I read he'd won the award and I would like to see it retracted."

Dr William Weir, a retired consultant physician who says ME is caused by a chronic viral infection, called the decision "almost satirical". "If the scientific data is properly examined it will be seen that Professor Wessely's doctrine is wrong and it will be proved to be wrong in about five years' time," he said.

"Plenty of people are still dying of diseases which other people do not believe." (Dr. M.N.C. Dukes).CBT and GET for ME: "There is no nonsense so gross that society will not, at some time, make a doctrine of it and defend it with every weapon of communal stupidity."

Robertson Davies

THE NICEGUIDELINES BLOG VERSUS THE NICEGUIDELINES

These are NOT the NICEGuidelines. This is "The NICEGUIDELINES BLOG." What are the differences:

The NICE Guidelines are biased publications based on the GOBSART (Good Old Boys Sitting Around a Table) approach.

This Blog however is not only evidence based but also uses critical reading to judge papers and articles. I also use common sense and listen to others. And finally I read both psychiatric and medical evidence and opinions from around the world to come to a conclusion.

I’m not sponsored by anybody or paid by whatever company as seems to be the norm with many psycho people who publish the same article almost on a weekly base.

So if you value an opinion, formed as a result of participating in many ME activities, for example being bed bound for years, you have come to the right BLOG. All these activities have allowed me to form an opinion as a Doctor and as a Patient. And that is important as the voice of the latter is discarded by many including NICE.

If you don’t read this blog, you will miss out on “accredited” medical education. If you do read it, you may actually become a doctor who doesn’t stop thinking or forgets to ask critical questions. Many good things, including satisfied patients are at your command.

So, if you arrived here for the straightforward GOBSART approach, I will disappoint you. If you are interested in forming your own opinion about ME, and other interesting things, read on!

About Dr. Speedy.

I am a Family Physician or GP as it is called in Australia or the UK. I am also an ME patient unfortunately. Bedbound that is. So at the moment I’m in private practice so to speak. I’ve got only one patient, ME, or is it me?

I graduated as a doctor a long time ago, and I am the founder and editor of The NICEGUIDELINES BLOG, an internet based ME BLOG that is devoted to critical reading and cheering you or ME up.

I have the following conflict of interest: I would like to get better and see that the wasting of public money on CBT (talk therapy for a neurological disease, really helpful) and other silly therapies for ME stops, and will be used in better ways.

My goal has always been to help, and if possible, cure patients. With this disease you will soon find out that many psychiatrists and psychologists are only in it to make money and get their name in the spotlight. And what happens to and with the patients is irrelevant.

I stand to benefit both mentally, physically and also financially if this silliness would stop, and I would get my health back, and I can go back to work and have a normal life again. Please evaluate my postings with this in mind! And remember, there are also (lots of) psychiatrists and psychologists who haven’t switched their brain off.